Balancing Acts


Apparently, there’s a bit of a Twitter storm going on at the moment around the hashtags #highfunctioningmeans and #functioninglabelsmean.  This has largely passed me by, because I’m not connected to the Autistic community on Twitter.  Twitter is for my public persona – you know, the one where I’m high functioning, and not in any way autistic.

But luckily for me, this subject has started to seep into the glorious anonymity of the blogosphere.  Both feministaspie and ischemgeek have excellent posts on it this week.  In reading ischemgeek’s satirical but oh-so-true account of what it means to be called high functioning, one phrase really hit home:

High functioning means you will always walk the tight rope between burnout and dehumanization. Don’t fall.

This is so accurate, and so painful, because I am really not good at walking tightropes.  In fact, I’m not good at balancing at all.  I can’t walk on walls without looking down at my feet; I can’t walk downstairs without holding a handrail; I couldn’t ride a bike without stabilisers until I was eleven.  I even have trouble walking on flat surfaces if the carpet or Lino happens to be patterned, for crying out loud.

And it’s not just literal balancing I have trouble with.  It has often been noted by people who aren’t me that I’m not very good at holding a balanced viewpoint, or seeing both sides of a debate.  (It has often been noted by me that it’s ridiculous to consider viewpoints which are plainly wrong when the debate or problem clearly has one logical solution – but that’s another story.)  I’m not very good at balancing my life either – I tend to swing between frenetic activity and complete inertia; and, as I’ve noted before, I’m pretty rubbish at doing things like managing my time or getting enough sleep.

But the thing about walking the tightrope between burnout and dehumanisation: absolutely.  I know exactly how that feels.  Where I grew up, there used to be a saying, “street angel, house devil,” for those kids who were paragons of virtue at school and in public, but created merry hell at home.  I sometimes feel that I live my whole life that way – being all empathic and sociable in public, then closing my street door and descending into meltdown with the strain of it all.

In some ways, parochial ministry is the ideal life for someone who’s autistic.  You work alone a lot of the time; you work from home a lot of the time; and you get to manage your own diary, which allows plenty of scope for decompression time.  It’s not like being a teacher or office worker or mechanic, where you’re expected to turn up and function at the same time each day or you’ll lose your job.  The number of occasions in the week when I absolutely have to be there and be on form are, thankfully, relatively few.  The downside is that those occasions are all really important – and I’m almost always centre stage.  If there’s a service, I’m probably leading it.  If there’s a committee meeting, I’m probably chairing it.  If there’s some kind of social event, it’s incumbent on me to mingle, and mingle well.  No matter how ‘low functioning’ (or non-functioning) I might be at the time, I simply have to turn up and perform.  You can’t really cancel a Sunday service, or call in sick to somebody’s funeral.

I guess that somebody who believes in functioning labels might say that this simply proves that I’m high functioning after all.  If I can be non-speaking at home, then suddenly snap into preaching a sermon, doesn’t that just prove that I can do it if I put my mind to it?  If I can’t bear the smell of any cleaning products or perfumes in my own house, but then sit for an hour in somebody else’s home being assaulted by their air freshener, doesn’t that show that it’s not really sensory overload, just fussiness?  If I can be right on the brink of meltdown and then suddenly suspend it while I answer the phone to the funeral director, surely that’s evidence that it’s not a real meltdown, and I could perfectly well control my behaviour if I wanted to.  After all, a “proper” Autistic, a “low functioning” Autistic couldn’t do any of those things.

Well, as it happens, I know some so-called “low functioning” autistic people, and it’s clear to me that they walk the tightrope just as I do.  I see them employing workarounds and self-management strategies all the time; I can only imagine what it costs them.  I certainly know what it costs me, because time on the tightrope doesn’t come cheap.

The older I get, the more “autistic” I seem to become.  Some of that, I think, is positive: I’m more attuned to the things that I can’t cope with; I’m less bothered about employing strategies like stimming and echolalia that help me get through the day; I’m more knowledgable about autism in general, so I’ve re-categorised quite a lot of my character, thinking and behaviour into the “I’m autistic” file rather than the “I’m a complete failure as a human being” file.  But I also know that the years of walking the tightrope are starting to take their toll.  I have more, and worse, meltdowns now than I ever did.  I’m less able to cope with sensory overload.  I’m starting to have problems with spoken language, and even periods of not being able to speak at all, which is supremely scary for someone who has always relied on verbal agility.  Worst of all, I am becoming less able to do the everyday stuff of life, like shopping and loading the dishwasher and getting dressed, and even getting up in the morning.  I’m lucky to have someone who helps me a bit with all that stuff, out of the kindness of their heart and without me paying them; but I can’t rely on that lasting forever.  Sooner or later, something is going to have to give.  Sooner or later, I will actually need proper support.

And therein lies the terrible catch-22 of being so-called high functioning.  As ischemgeek put it so well:

High functioning means you’re disabled enough to have real challenges, but not enough to get any help.

All those years of passing and achieving got me a bunch of qualifications, a job and a certain amount of status and respect; but what they prevented me from getting is a diagnosis,  any accommodations or support, any recognition that I might have difficulties which can’t just be resolved if I try a bit harder or pull myself together.  Above all, they’ve landed me in a place where I don’t feel that I can “come out,” where I’ve internalised society’s ableism so much that the only place I’m prepared to say all this is on an anonymous blog, all the while praying that nobody ever finds out who I am.

And so, despite the fact that I don’t like functioning labels, I’m pro-neurodiversity and I definitely don’t think Autism is anything to be ashamed of, I end up perpetuating the very stereotypes I detest.  What we really need, I reckon, is for everyone who is actually autistic to get off the tightrope, stand up and say: This is me.  I’m Autistic.  Here are all the awesome things I can do.  Here are all the things I struggle with.  Here are the reasonable accommodations I need.

Think how brilliant that would be.  I definitely think everyone should do it.

Somebody else go first.

Face Facts

imageRecently, one of the schools with which I’m involved played reluctant host to an Official.  We all know the type – someone who last taught actual children twenty years ago, but still feels qualified to tell other teachers how to teach.

I met the Official with other members of the committee first thing in the morning.  Pretty much the first thing he said was, “I won’t look at you much while we’re talking, as I’ll be writing down your answers.” This didn’t seem to wash with my colleagues, who commented afterwards that the Official didn’t seem to be very interested in what we were saying, as he never made eye contact with any of us. (Naturally, this had completely passed me by, although I did notice that if you played dot-to-dot with the flecks of dandruff on his lapel, you could draw an upside down vertical fish.)

Throughout the day, other people commented that the Official was rubbish at names, as he frequently asked the names of people he’d been talking to within the last hour, and even managed to mix up the names of the Head and Deputy several times.

But it wasn’t until the evening that the Official dropped his big clanger.  At the final meeting of the day, we were joined by two representatives from the local authority, who sat next to one another directly opposite the Official.  As the first rep introduced herself, the Official said: “We had two reps this morning.” The second rep shot him a look.  “Yes,” she said, “that was me.  I’m still here.”  There were a few moments of awkward silence, until eventually the Official said, “I’m sorry, I didn’t see your face behind your laptop.”

And then I secretly smiled to myself.

I don’t know whether the Official was on the Spectrum – or, if he was, whether he knew about it – but I did recognise the strategies, excuses and workarounds he’d been employing all day, not to mention that awful tumbleweed moment and frantic back-pedalling that happens when you realise you’ve made a dreadful gaffe.

Like the Official, I don’t tend to look people in the eye, although I fancy I’m a bit better than him at pretending I do, and I don’t think people often notice.  Not making eye contact certainly isn’t ideal for social interaction, but people tend to presume you’re nervous, distracted, busy or just a bit rude rather than completely weird.

Not being able to recognise faces is another matter entirely.  For some reason, it’s more socially acceptable to say, “I’m terribly sorry, I’ve forgotten your name” than it is to say, “I’m terribly sorry, I have no idea whether we’ve ever met before, and you could literally be anyone.”

The colloquial term for this difficulty is face-blindness, but I’m a fan of the official world, Prosopagnosia.  I like this word partly because it’s made up of two Greek words which remind me of happy days studying Patristic theology (I know, I need to get a life), but partly because I think it is a much better expression of what is going on for me.  Prosopagnosia is made up of the Greek words prosopon, meaning face, and gnosis, meaning knowledge.  In Greek, the prefix a- makes something a negative (like our English un-), so Prosopagnosia literally means ‘face not-knowingness.’

Prosopagnosia is not (at least, for me) a case of face-blindness; I can see that the person opposite me has two eyes and a nose, I can describe their features, and I can tell that they are different from the person standing next to them, even if they look similar.  It’s not that I perceive faces as a blank canvas.

Proof that telly is bad for your health.

Proof that telly is bad for your health…

My problem is that facial features just don’t seem to stick in my head.  I need to meet someone about ten times before I’ll be confident of recognising them again.  This is worse when I meet people out of context (which is a nightmare in my job, because I’m forever bumping into funeral families in the supermarket or shop assistants at funerals).  But it happens even when I ought to have some clue who they are; when a couple arrives in my office at Church and says, “We want to talk about our wedding,” I have no idea whether I’m meeting them for the first time, or I’ve met them once before and we’ve already got a date in the diary, or I’ve met them several times and I’m marrying them on Saturday.  When the actual wedding comes round, I can usually manage to identify the bride (big white dress, and all that), but the groom, the best man and various other blokes all unhelpfully turn up in identical suits, and often I have to hope for the best that I’m marrying the girl to the right guy.

Over the years, I’ve developed a number of ministry-related cheat scripts to get round this issue. I’d love to hear of any others, but here are a few of the ones that work for me:


Lovely to see you, what can I do for you today?

This works well for people who just drop into the Parish Office (where I deal with weddings, Christenings and the like). What I’m really saying is, “I have no idea who you are or why you’re here,” but they don’t seem to notice.  People are usually quite helpful in replying with something like “we want to pay off some money towards the wedding,” which gives you a bit of a clue.  Occasionally, they’re a bit more vague and say unhelpful things like “it’s about Harry’s Christening,” but you can usually follow that up with “have we got a date in the diary?” which is more helpful than “have I ever met you before?”


I’m terribly sorry, I’ve forgotten your name.

As it happens, I have a pretty good memory for personal details.  Once I know who you are, I can probably tell you what your middle name, what your kids are called, which street you live on and where you went on holiday five years ago.  But it is a lot more acceptable to forget names than faces, and once I’ve got the name straight, I can add other personal details into the conversation which usually convinces people that I really was paying attention the first time round.


Remind me when the baptism/funeral/wedding is/was.

I keep all my files in date order for this very reason.  Nobody expects you to remember the date of their wedding in the same way that they expect you to remember who they are.  So, as soon as I know the date, I can go scrabbling through the files, and hey presto! there are their names.


Hello, Rover

Bizarrely, I find it much easier to recognise dogs than I do people (I know of other autistic people who even have trouble distinguishing between dogs and cats, let alone one dog from another, so I feel blessed in this regard). If I already know the dog, I can usually work out who the people are. And if not, then I often find that talking to dogs or babies often makes adults volunteer the information.  Nine times out of ten, if you say to a baby, “this is a strange old church, isn’t it?” someone will follow it up with, “this is where mummy and daddy got married last year.” Bingo!


As with the eye contact thing, I don’t know how convincing these workarounds actually are.  Back at the school, it was perfectly obvious to me that the Official had simply failed to recognise the rep (I mean, it’s not as if she had a laptop bigger than her head), but I don’t know whether other people noticed.  By that point in the day, most people had decided he was completely socially inept anyway, so maybe it didn’t matter.

But, generally, it does matter.  Despite the stereotypes, I (and most autistic people) do actually care about other people’s feelings, and there are probably few things more invalidating than feeling that somebody you’ve met before has no idea who you are.  At the very same school, a couple of years ago we had two new teachers who both joined at the same time, Paula and Ann.  Both happened to have similar hairstyles, height and build, and I had the devil’s own job working out which was which.  Recently, I was talking to Paula, and I mentioned that I sometimes had trouble telling people apart.  “I know,” she said.  “You called me Ann for about six months.  I presumed it was because we were both fat.”

Ouch.  Must try harder.